A new language inviting you to understand more about the rare disease community

Language is fundamental to how we communicate with one another; it allows us to express our emotions, share our experiences, and connect on a deeper level. But what happens when language stops being applicable to you? How do you communicate something that most people have never experienced? These are very real considerations for many people within the rare disease community, including those living with rare diseases who experience isolating conditions which people who are unaffected often struggle to fully understand.

However, everyone has a right to be understood. As part of our work to support Rare Disease Day, we are proud to launch ‘The World’s Rarest Dictionary’ project in partnership with members of the rare disease community. The ‘World’s Rarest Dictionary’ project aims to capture the unique experiences of those impacted by or involved with rare diseases, by developing new words representative of patient organizations, policy groups, families, clinical teams, and researchers. This will help bridge the gap between those familiar with the rare disease space and those who are not. Our hope is that it will ultimately result in a new era of more relevant and relatable vocabulary around rare diseases.


The power of language

Last year, the world experienced an unusual shift from a physical to a more virtual world. The COVID-19 pandemic reinforced the power of language, which was exemplified through new meanings created from new combinations of words that resonated on a global level. For instance, ‘social distancing’ and ‘support bubble’ were some of the terms that represented our new lifestyle; helping individuals worldwide connect and share their mutual experiences during this time.


Our campaign

More than ever, individuals have had to rely on language to feel connected, and this campaign demonstrates how new language can play a role in further understanding the thoughts, feelings, and experiences of the rare disease community.

We will continually create new words in partnership with those living with or affected by rare diseases to form an entire dictionary called ‘The World’s Rarest Dictionary’, which will include a definition for each unique word. This is a global, long-term campaign, which involves numerous countries and different languages to help share unique experiences in an accessible way. Our commitment to the rare disease community is 365 days a year, not one. 

To build a representative dictionary, we have been running a series of virtual workshops where we provided a framework for new words to be created, focusing on the experiences and feelings of participants. However, we wanted to ensure this word generation process would be available to anyone who would like to participate within the rare disease community. Therefore, individuals can also contribute by creating a new word using our word generator on our brand new microsite, theworldsrarestdictionary.com. Once submitted, your newly created word, along with the definition you’ve provided, will be considered for entry in the dictionary.

As Austrian philosopher Ludwig Wittgenstein once said, “the limits of my language mean the limits of my world.” With a new dictionary comes new understanding and new possibilities of interpersonal connections that are limitless.

The rare disease community is coming together to create unique words, inviting people to see the world through their lens. With ’The World’s Rarest Dictionary’ underway, we will be sharing updates throughout the years to come. Thank you to everyone who has been involved in this project so far, and we look forward to developing this dictionary with the those living with and affected by rare diseases, through Rare Disease Day and beyond.

Date of preparation : February 2021
Job number : ALL-ALL-002423

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